Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals

Abstract Background Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. Objectives The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. Methods Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019–2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio‐recorded, transcribed and analysed using reflexive thematic analysis. Results An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self‐management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. Conclusions Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. Patient or Public Contribution Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project.

Parkinson's is frequent and varied: from subjective cognitive decline and mild cognitive impairment to Parkinson's disease dementia (PDD). 4Longitudinal cohort studies report a 2.5-6 times higher risk of developing dementia than age-matched people without Parkinson's of a similar age. 5,6However, the diagnosis of cognitive impairment in Parkinson's is complex 7 and under-or delayed diagnosis are prevalent. 8Although cognitive impairment is common throughout Parkinson's, 4 dementia in Parkinson's is considered a hallmark of advanced disease. 91][12][13][14] The clinical features and broader context in Parkinson's are heterogeneous but generally different from Alzheimer's disease, though similar to dementia with Lewy bodies (DLB). 7,15Previous work has shown that ability to live well was even more reduced in PDD, for patients and caregivers, compared to other dementias, 16 and caregivers of people with PDD experienced more stress than those caring for people with Alzheimer's disease and vascular dementia, and neuropsychiatric symptoms and cognitive fluctuations are associated with caregiver stress. 17Qualitative accounts of the lived experiences of cognitive impairment in Parkinson's are sparse.Evidence in this field is largely quantitative and focuses on family caregiver burden and unmet needs. 18e existing qualitative literature specific to this group has shown cognitive impairment to be perceived as a threat to identity and role in the participants with Parkinson's, with poorer adjustment. 19For caregivers, greater impact and feelings of loss resulted from cognitive than physical impairments in those they care for. 19,20Lewy body dementias confer diagnostic uncertainty, fear and worry for present and future, behavioural and psychological symptoms. 18People with Parkinson's with executive dysfunction but not dementia experience difficulties in everyday life and relationships even at mild degrees of impairment. 215][26][27] However, experiences may be different for Parkinson's compared to other dementia processes, given the different clinical presentations and since the cognitive impairment is an evolving aspect of an existing neurodegenerative condition, with coexistent motor and nonmotor symptoms.It is therefore important to explore the perspectives of this group as distinct from other dementias.
The aim of this study was to explore the experiences of people with Parkinson's and cognitive impairment (PwP), triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals (HCPs).

| Patient and public involvement (PPI)
Five PPI members (two people with Parkinson's, and three caregivers) contributed to the study, all with personal experience of Parkinson's and cognitive impairment.Between them they contributed throughout the entirety of the project, giving input on conceptualisation as well as advice and review of topic guide questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project.

| Participants
Three groups of participants were recruited: PwP, family caregivers and HCPs.Clinicians in primary and secondary care identified and approached PwP in whom they recognised cognitive impairment, with or without formal cognitive testing/diagnosis.Invitation letters, information leaflets and response slips were mailed.Adverts were also circulated via relevant charities.HCP participants were identified through snowballing.Potential participants were screened for eligibility by telephone (criteria in Table 1).
Purposive sampling was used to ensure diversity of different clinical and social backgrounds in terms of age, ethnicity, education, living arrangements, duration of disease, severity of functional and cognitive impairments, served by different healthcare providers (see Tables 2   and 3).For HCPs, a range of different professional backgrounds from a range of geographical areas was sought (see Table 4).

| Data collection
Topic guides were developed, informed by existing literature 19,21,[32][33][34] and multidisciplinary team reviews, including PPI members, to explore experiences of living with or working with Parkinson's and cognitive impairment.Interviews were conducted by J. S. P. (clinical academic trained in qualitative research methods, not previously known to the PwP or caregiver participants and no close relationship to any HCP participants), in person, by telephone or video call, depending on public health restrictions and participant preference, November 2019-July 2021.Open questions were used to guide discussion with prompts and probes facilitated to deepen understanding.Language relating to cognitive impairment used by the participant was used by the interviewer for sensitivity.According to their preference, all PwP and caregiver interviews were conducted remotely with them in their own home, and HCPs were in their workplace.No nonparticipants were present.PwP were encouraged to ask for an interview time expected to be best for their condition, and breaks were offered to accommodate tiring.
Questions covered a range of topics (see File S1 for overview), with this article focusing on those relating to experiences of living with cognitive impairment in Parkinson's; other data has been analysed separately regarding remote consultations 35 and healthcare services. 36Notes were also taken by the interviewer.Interviews were audio-recorded and transcribed 'verbatim'.Identifying information was removed and the accuracy of transcription was checked (J. S. P. and E. C.).Data familiarisation and preliminary analysis commenced in parallel with data collection to enable regular appraisal of 'information power'. 37Data collection discontinued when the team agreed that the data had adequate power to address the study aims.A greater number of HCPs were included considering the range of different professions involved in the management of Parkinson's.

| Analysis
Reflexive thematic analysis, described by Braun and Clark, 29,30 was used, following an inductive process.This involved data familiarisation through a thorough reading of transcripts (J. S. P. and E. C.), followed by initial creation of codes as labels of data meaning.Sample transcripts were independently reviewed, and codes were created by two other team members (M. A. and N. D.), then all codes were discussed together to agree a coding framework.Codes were iteratively developed through application to further transcripts T A B L E 1 Inclusion and exclusion criteria.

Sample Criteria
People with Parkinson's and cognitive impairment Exclusions: Care home residents, atypical Parkinsonian disorders and participants anticipated to be approaching end of life.
Family caregivers A family member who closely supported the person with Parkinson's, whether or not they identified as a 'Carer'.
Person being supported needed to meet te inclusion criteria above.
Healthcare professionals A person working within, or in collaboration with, healthcare, who encounters people with Parkinson's and cognitive impairment in a professional capacity.
a Participants identified by a clinician as having cognitive impairment were included even in the absence of a formal diagnosis since cognitive symptoms are often underdiagnosed in clinical practice. 7,8Participants were required to recognise cognitive symptoms since it would not be appropriate to attempt a detailed interview discussion of these symptoms if they denied them.describes approaches to positively manage the condition, thus influencing these experiences.Furthermore, shaping the whole experience was a sixth theme: 'Preconceptions about Cognitive Impairment'.The themes and subthemes are illustrated in Figure 1.
Supportive quotes are provided in File S2.

| Challenges in Daily Activities
All participants described the impact of symptoms on daily activities, exemplified in Table 5, explaining how the cognitive difficulties compounded the physical.Although this varied with severity of impairments, particular challenges that had evolved through the interaction of physical and cognitive decline related to mobility and falls, personal care tasks, reading and using computers.
Health management activities were notably impacted by the addition of cognitive impairment, even at relatively mild degrees of impairment.This manifested as difficulties in remembering appointments, reduced safety awareness, difficulty utilising resources and confusion over the multitude of different professionals involved and increasingly complicated medication regimes.

| Evolving Communication Difficulties
Communication was a profound challenge for many participants from all three groups.Physical changes in speech, gestures and facial expression were compounded by cognitive slowing: The combination of impairments was increasingly restrictive with inability to do things that were previously enjoyed.Difficulties in going out, driving, undertaking hobbies and going on holidays were common.The reduction in leisure activities and withdrawal from group socialising was conveyed as their world shrinking: the world gets smaller, as I say, and people just do less and less and less.(HCP20, Speech and language therapist) The lack of social activity was described by some to cause loneliness, reduce motivation and exacerbate cognitive symptoms.

| Intensified relationships
Alongside the reduction in wider social life and activities, participants roles, which was challenging on both sides.For some, the onset of dementia was a pivotal moment in the perception of this role change: I suppose it started when the dementia element came in.That's when I started to feel, yeah, I'm a carer. (Caregiver12) The transition to caregiver and cared-for brought negative emotions on both sides.Some PwP felt guilty or a burden, and some found themselves being short-tempered with their caregiver:  Frequently, cognitive decline was not acknowledged, and many described a state of denial, predominantly driven by fear.There was evidence of PwP and some caregivers distancing the term 'dementia' and minimising cognitive symptoms within the interviews, and several HCPs described this from their experience: ….I don't think he's got any dementia or anything like that.Just, on occasions, he forgets.The fact that people might develop dementia might be the final straw that people don't want to talk about … I think with Parkinson's in particular, it's a chronic disease and the dementia it's, you know, it's another kind of added on terrible thing to happen really.
(HCP2, psychiatrist) In some cases, cognitive changes go unnoticed or are noticed but misattributed.Many HCPs reported that cognitive decline was often blamed on ageing, and indeed age was referenced by several PwP and caregiver participants: … but all 60-year-old's memories deteriorate a bit.(PwP8) Some participants perceived a poor understanding of the nature of cognitive changes in Parkinson's to contribute to this: … people think of dementia as being a memory problem.Whereas in dementia in Parkinson's it may be more executive functioning, so may be more around organisation or planning or visuo-spatial problems so it may not always be obvious … (HCP2, psychiatrist)

| DISCUSSION
Our study highlights the importance of compound cognitive and physical deficits that underpin the lived experience, through a variety of facets as illustrated in Figure 1.There has been a paucity of qualitative research in this specific patient group, yet the distinction from other cognitive pathologies and added challenge of cognitive problems within Parkinson's were perceived as important by many of our study participants.

| Context of previous research
Findings were consistent with the small body of literature in this patient group as discussed already.Comparing our findings to those of overlapping but different patient groups highlights subtle differences in experiences.Everyday task difficulties, emotional struggles, communication problems and social changes, are all reported both in dementia 22,25,39,40 and in Parkinson's (particularly late stage) 19,[41][42][43][44] more broadly.The important distinction in the present study was the emphasis on the compound effect of cognitive and physical symptoms on each of these aspects.Slowing, tiredness and fluctuations can also be both physical and cognitive, complicating living with and managing impairments.Motor and nonmotor fluctuations are well recognised in Parkinson's, [45][46][47] with profound impact of motor fluctuations reported, 43 but the lived experience of cognitive fluctuations in Parkinson's has not been previously reported to our knowledge.9][50] People with Parkinson's and and cognitive impairment lose their voice both physically and metaphorically, from cognitive change and the associated shift toward communication via caregivers, with marked impact on relationships.
The difficulties identified with health management even at relatively mild degrees of cognitive impairment are important to recognise in this patient group, given the clinical complexity of Parkinson's.For example, complex dynamic medication regimes for motor fluctuations will be harder to implement when memory, learning and processing are impaired, heightened by communication difficulties between PwP and clinicians.This requires careful clinical consideration and potentially additional support.
Experiences of dementia and Parkinson's more broadly have been conceptualised as 'loss'. 19,22,41In the present study, cognitive impairment was perceived as a major additional loss, for some the 'final straw', developing on the background of established physical, emotional and social losses.This marks Parkinson-related cognitive impairment out from other dementia pathologies: a new dimension to existing decline, rather than a new condition.Moreover, fear of acknowledging that further loss was a potential barrier to discussing cognitive concerns.
We found uncertainty to be a source of fear for many PwP and caregivers.This related to how symptoms would exhibit day to day, and to the evolution of symptoms over time with fear around prognosis, both of which have been highlighted in Parkinson's more broadly. 41,51,52Fear and uncertainty around dementia were however marked for this patient group.Dementia as a whole is shrouded in uncertainty 53 and unpredictability of the disease course. 54,55This again highlights the composite effects of the Parkinson's with cognitive decline.More positively, whilst some uncertainty was considered unavoidable, the distress from unexpected symptoms could potentially be ameliorated with information provision.
Self-management strategies, akin to previously reported 'problem focussed' coping strategies, 19 were employed across the cognitive spectrum.They included practical and psychological strategies as well as information seeking and exercise or stimulation.
Cognitive impairment has often been used as exclusion criteria in studies of self-management in Parkinson's, 56 but the experiences of our participants suggest this warrants further investigation.As for dementia 25,[57][58][59] and Parkinson's more broadly, 60 relationships within families and wider social networks were also facilitators to better wellbeing.However, the dual impairments for this patient group may heighten barriers to peer support compared to other dementias or Parkinson's without cognitive impairment.For example, visible physical changes from Parkinson's impact self-perception, and slowed cognitive processing impacts social interaction.
Consistent with global reports 61  | 11 of 14 dementia care, 63 and is important for clinicians to be aware of.As for DLB, 64 poor understanding of this subtype of cognitive impairment was a perceived issue, in part due to the prominence of nonamnestic cognitive changes.Poor awareness of the heterogeneity of dementia by wider society 64 was echoed in our study.

| Implications
This study has shown some broad similarities between experiences of cognitive impairment in Parkinson's and other cognitive pathologies but also highlighted differences considered important for clinical practice and public awareness.Table 6 summarises these findings with applications and implications.

| Strengths and limitations
A range of individual demographic and disease factors and professional backgrounds were represented in this research.Conducting the study remotely enabled inclusion from a wider geographical area.However, the patient and caregiver participants were all based in the Southeast and East of England, more were from urban and semiurban than rural areas, and there is a lack of non-English language-speaking participants.
Experiences may differ in these contexts, so some perspectives are potentially underrepresented.This concern is somewhat ameliorated by the inclusion of HCPs with a breadth of experience from different settings and patient groups.The consistency between HCP and PwP/ caregiver experiences suggests that the presented findings are relatively transferable within the United Kingdom, though more subtle differences relating to these factors were not explored.Inclusion of participants with subjective cognitive symptoms rather than a formal diagnostic process prevented being restricted by the problem of underdiagnosis. 8Conversely, we did not conduct cognitive testing or formal assessment of Parkinson's severity, so findings cannot be interpreted in the context of these objective measures.The multidisciplinary research team and PPI input throughout helped with interpretation of data and meaning for practice and policy.An unavoidable challenge for research with this population, as with dementia, 65 is that the condition conveys communication difficulties.Some participants had difficulty expressing their views and caregivers proxy views could be biased.The use of remote interviews may have exacerbated communication difficulties for some but were necessary due to public health restrictions in the context of Covid-19 or were participant preferences.Individuals with more severe impairments but no caregiver may be underrepresented.

1 .
Diagnosis of Parkinson's disease made by a clinical specialist.2. Cognitive impairment-Identified by the clinician and symptoms recognised by the person with Parkinson's: described in lay terms as 'changes in memory, thinking, concentration'.a

For
some, cognitive impairment conveyed difficulties with problem solving or learning new things, which then impacted physical function.Many experienced physical and mental slowing and found tasks to take more effort, which caused tiredness and then further exacerbated symptoms.For some, fluctuations in medication response (physical and cognitive) impacted function.T A B L E 4 Backgrounds of healthcare professional participants.Professionals (n = 27) From the Southeast of England, the Midlands and Scotland s UK local adviser a a Charity sector role to help people with Parkinson's, including providing advice and information and supporting access to services.F I G U R E 1 Map of themes and subthemes and their interactions.Dashed arrows indicate a modifying influence.Filled arrows indicate a causal relationship.Participants from all three groups consistently described negative emotional responses to the evolution of cognitive impairment on top of Parkinson's.Neuropsychiatric symptoms such as hallucinations, delusions and depression caused particular distress for PwP: I remember people, men mainly, riding up and down my house asking me if I need to be taken somewhere.'Need to go for a ride?' Now I'm not sure if these are hallucinations but that started me off with <spouse> 1 and <spouse> 2 because they were tormenting me.(PwP3) Many participants described or perceived frustration arising from the addition of cognitive symptoms: But my concentration is definitely gone, you know?I hate that because it's very frustrating.(PwP9) T A B L E 5 Supportive quotes for Challenges in Daily Activities.
is] very quiet and soft and they can't vocalise themselves very well.It can affect their speech in different aspects and impairment, whether it's their ability to concentrate, so in conversation their ability to search for words, you know, to express themselves, etc.So, that is difficult, as well.(HCP16, Parkinson's nurse specialist) Loss of spontaneity of speech impacted conversation style including off-the-cuff comments and ability to make jokes and keeping up with conversation was problematic: I'm not as quick in responding or in saying things.(PwP1) For some, the combined impairments led to reliance on caregivers to support communication.This could lead to loss of privacy and autonomy for the PwP: a caregiver being required for communication impacted every interaction and anything they want to express: [PwP] hasn't had the privacy to say anything for years.(Caregiver11) 3.4 | Social Shift These practical, psychological and communication difficulties led to a social shift for those with Parkinson's encompassed by two subthemes: 3.4.1 | Shrinking world Participants from across the groups described PwP finding social encounters increasingly challenging due to worsening communication difficulties.Group interactions and telephone calls were especially challenging.Some PwP felt embarrassed, misunderstood or excluded: it's embarrassing when you've been talking for five minutes and then it appears nobody heard what I've been saying.I could've been standing in the corner muttering away to myself.(PwP4) Socialising therefore reduced, sometimes through avoidance and sometimes through social contacts not adapting to the change: there's a tendency eventually to feeling a little bit marginal and maybe a little bit tired so you distance yourself from the group … (PwP1) described close relationships becoming more intense.The overall progression of Parkinson's caused increasing dependence, often requiring close family members to transition into and adapt to caring PIGOTT ET AL. | 7 of 14

'
Dementia' had widespread negative connotations across the participant groups and the word conferred fear in most PwP and caregivers.The distinction between Parkinson-related cognitive impairment and other cognitive conditions was perceived by many to be poorly understood, including by professionals.Many HCPs perceived stigma around dementia to engender denial and make conversations about cognition challenging: … you have to be very careful how you word it around the stigma of dementia … (HCP22, Parkinson's nurse specialist) (Caregiver4followed by an extensive description of cognitive impairment impacting daily life) Some PwP were more aware of their denial, describing how they ignored cognitive symptoms, some referencing personal observations of 'dementia' in explaining their concerns: I've intentionally tried to keep away from that because my mother died of vascular dementia … I just don't want to think in that direction at all so I tend to ignore it, I know it won't go away but … (PwP5) For some, fear was a barrier to assessment and therefore diagnosis: No.I turned it [cognitive assessment] down.[…] I think, at the time, I was afraid I was getting worse, and I feared what was going to happen if they found-PIGOTT ET AL. | 9 of 14 which I suspect they would find-early stages of dementia.(PwP13) Some participants commented that cognition was not always addressed by HCPs: I don't often hear people [professionals] offer to say, 'do you have any problems with cognition or memory and would you like to do X or Y?'.I haven't often heard that.(PwP1) This was sometimes attributed to lack of time or capacity, or lack of HCPs' knowledge.Many HCPs described cognitive impairment in the context of Parkinson's to be a further loss, and a dementia diagnosis to be 'devastating' (HCP3, nurse practitioner, memory service), which could be a barrier to discussion: Cognitive impairment superimposed on the existing symptoms ofParkinson's has a multifaceted impact on life: daily activities, psychological wellbeing and communication are all affected.Together these lead to a 'shrinking' of the world in which the person lives and intensified close relationships.Intrinsic motivation, self-management strategies and supportive relationships have the potential to modify the experience for the better.Poor understanding of cognitive impairment in Parkinson's, compounded by fear and stigma around dementia leads to underrecognition.We identified a need for a more nuanced understanding of this complex condition, in which the physical and cognitive aspects combine and shape the experience of people living with Parkinson's and cognitive impairment.The findings should be used to deepen understanding in those who support PwP and cognitive impairment and promote wider awareness, tackling stigma and fear.
because of the Parkinson's, her memory-even on how to do things-is going away.So, for example, if she wants to stand up, she forgets that you have to do a certain number of motions to get up, or to sit down.She just gets it wrong'.(Caregiver7)'Well yes, a lot of trouble-falling is a big problem … It's falling over, is the problem with my mobility … Yeah, and safety, really'.(PwP4)few years ago, he was able to do email and he could look he could use the internet but now he-it's as if he's completely bamboozled by the screen.He can't, he can't work out how to, what to press'.(Caregiver2)Remembering appointments 'I think I've forgotten it [laugh].Um, time.If I've got an appointment and I know in my head I've got an appointment but I have to rummage through to find out what time it was'.(PwP3)So that is a big problem […] And I've got weak after that.It takes about a couple hours to wear off'.(PwP15)ManyHCPs and caregivers perceived PwP to struggle with emotional adjustment regarding loss of function and loss of their past roles.One described how some people lost their 'sense of worth' (HCP22, Parkinson's Nurse Specialist).Increasing impairments, especially cognitive, frequently conferred a feeling of losing control: safety awareness 'The dementia does put her at risk, because her head is telling her to do things that she really shouldn't.[…]herbodystill wants-well, I think it's her brain, actually, still wants to do these things, but her body is shutting down.One doesn't comprehend with the other.So, she still thinks that she can get up and walk to the front window, or go and put the kettle on, but the minute she tries to get out of that chair, she then realises, like, "oh, OK, this isn't a good idea".And then she falls.So, it's not computing'.(Caregiver14)Difficultyutilisingresources 'there are a lot of little gadgets around that can help you with that, like pill timers, there's all those sorts of things which are quite useful.But if your processing is not that good it might even be difficult to work out how to actually set those things'.(HCP12,PUKadvisor)Confusion over professionals involved 'I think the other thing as well at the moment that's confusing is he's getting hospital appointments because he's got the other complaints, like he's had to have injections for his bones and hips, there's the Falls clinic, pain clinic.Then obviously he's getting new appointments and then they're cancelled, so me and my brother have taken that over now and get scolded for it because he doesn't know if he's coming or going.[toPwP:]That'sreally stressing you out, isn't it?'(Caregiver6)Managingmedication'… with all the tablets moving about, I keep on getting confused about them'.(PwP6)Problemsolving'Well, I find I have difficulty writing things, working out things.I actually have to wait until then I've finished, then I go over it and see'.(PwP15)Newlearning'I started with French when I was about 40 and started with Spanish when I was about 50.And it was enjoyable, still is enjoyable.It's a bit more frustrating now because my memory isn't as good.It's a bit more of an effort'.(PwP1)Tiring'Iget mentally quite tired … if I get anxious or very tired, then it all gets worse'.(PwP1)Fluctuations'whenshe's on form she's got a good sense of humour and can chatter and all the rest of it.But when the memory's gone, which happens, then she's very quiet and very withdrawn'.(Caregiver10)'Whenit'snot working, it's-when it doesn't work, I can't-I'm like, I don't know what I'm doing.I can't-it's like, I can't do anything, not a thing at all […] I'm conscious of what I'm doing, but I just can't do them properly.Several caregivers struggled with the lack of definitive answers, unpredictability and fear of new, unexpected symptoms:They can't say, it'll be a year, it'll be 20 years.There's no knowledge, and I think that's very scary… (Caregiver12) However, peer support did not suit everyone: others had negative experiences, finding it 'depressing' to see what could happen or feeling 'guilty', perceiving others' conditions to be worse.
Variation between individuals in terms of adjustment and coping was evident.Positive influences on living with cognitive impairment in Parkinson's were described, encompassed by three subthemes: … the life is not over; you just have to adapt to your situation.And with my mum-so with my mum, I don't feel like she wants to adapt.She just wants to still do what she can do, which causes frustration and which causes problems, instead of maybe trying to adapt.PwP, sometimes supported by caregivers, employed a range of selfmanagement strategies to deal with the addition of cognitive symptoms.Several had sought information and self-educated: I think it's important for folks to get together … And you say to, 'I've tried this and this is working' … and to know what people actually feel.(PwP9) 62d a study of both Alzheimer's disease and Parkinson's,62negative perceptions and stigma, particularly around dementia, were perceived to be widespread.Whilst not Summary of findings and implications.Stigma can be a barrier to assessment and acceptance ▪ Understanding the context of existing diagnosis and impairments ▪ Differences to other dementia processes-different cognitive profile, trajectory and associated symptoms PIGOTT ET AL.
widely explored in Parkinson's literature, diagnostic difficulty resulting from deficits being hidden has been reported by HCPs in T A B L E 6